Terrifying genetic disease causes entire families to never sleep again | 60 Minutes Australia

[Music] [Applause] [Music] San Francisco is a progressive city of hope and ideas and for Haley and Lachlan Webb it's a place that might one day help save their lives so here we are in San Francisco it's very busy here and much chillier than Queensland this Aussie brother and sister have traveled halfway around the world to take part in a groundbreaking research project at a hospital in San Francisco undertaking a sleep study and as you can see I am looking more robot than human at the moment they are on a mission to find a cure to the rarest of diseases a waking nightmare that is killing their family one day Haley and her brother will wake up and never be able to go to sleep ever again police say they've received around a hundred and sixty complaints over the past year that's a spike of almost 30% it's exciting times here at SeaWorld with one Queenslanders know Haley as the bright and bubbly Channel 9 News reporter just wait until next year's record attempt a rising young star in the Gold Coast newsroom reporting I do like reporting yeah it's different every day it's exciting what about being the subject of a story yeah it's a bit bit of a different one I mean I'm obviously used to being on one side of the camera and having it flipped around is a bit stolen things we can I've worked with Haley over the years and what's the latest on his condition Haley but I only recently discovered her family's devastating history my auntie passed away at 42 my mum passed away at 61 my grandma passed away at 69 in saying that mums brother died at 20 so we're just hoping we're not one of the young ones are you in serving define surfing right now 30 year-old Hayley and 28 year-old Lachlan are fit and healthy but they both carry the same genetic ticking time-bomb that could trigger any day it's a disease called fatal familial insomnia or ffs I in my early teens I remember becoming aware of it aware that we had this family curse all who have the gene are destined to die from it this confronting footage from a sleep clinic in Italy shows how FFI tormented sufferers there is no treatment and no cure the disease stops its victims from ever falling into a deep sleep instead they hover in a Twilight Zone that leads to rapid mental and physical deterioration and death Hayley's family is one of only 40 in the world that have it my grandma started getting sick and dying her eyesight went she had signs of dementia she was hallucinating and couldn't talk eventually she was diagnosed with FF I that was the first time that the family even were aware that FF I existed [Music] Haley's family lived in the shadow of this terrifying disease never knowing when it would strike again in December 2011 Haley's mom Darrell started showing the first symptoms I remember leaving for work to my new post on the Sunshine Coast in mom saying you know like have a great day have a great first day and I'm so proud of you and then getting back and later that week she was calling me Jillian and she thought I was the housekeeper like it just it was incredibly aggressive deep inside Noelle's brain a devastating transformation was taking place FFI causes clumps of abnormal protein that damaged nerve cells eventually forming sponge-like holes in the thalamus the part of the brain that regulates sleep your body's not allowing itself to rejuvenate it off so it's sort of like me being awake for the last six six months of your life having lost the ability to fall into a deep sleep morels dementia-like symptoms soon progressed to full-blown hallucinations mum's first child Julian passed away at six months of age before Laughlin and I were born she would wake up in the middle of the night convinced she could hear baby crying we need to save the baby we need to save the baby and she would get out of bed and try and get down the stairs but of course her balance was off and she would fall down the stairs the disease took Noelle's mind then her body in the final weeks she couldn't walk and couldn't swallow just six months after that lethal gene was triggered Narelle lost her fight for life so hard for you to see her to climb like that and so quickly yeah yeah it was now to face the big life moments like getting married and having children and house hunting and all of those fun things that she should be around for um yeah it's just not happen you know around for those moments that just you miss her I really miss her I really miss that yep [Music] boy you had some big changes huh for American couple Sonya vallabha and Erik medical fatal familial insomnia has been both devastating and life-changing in 2010 they watched Sonya's mum cam knee go through the same traumatic symptoms things started to like progress extremely rapidly she was too weak to stand and balance if she if she tried she would fall but she was too confused to remember that she was too weak to stand so if you left her even for a second she would try to stand and then fall and hit her head we had no idea what was happening it was terrible it was terrible months after her mother's death Sonia found out it was FFI and tests showed she too was carrying the same genetic mutation Sonia was a law graduate Eric worked in transport technology knowing that their time together could be cut short the couple quit their jobs and devoted their lives to the quest for a cure we didn't know anything about biology I mean when we found out this was a genetic disease and that it was dominant we had to look up what that meant it's hard to imagine now that there was a time when we didn't have such a pressing motivation to get us out of bed and get us to work every day the husband and wife team and now leading researchers at the prestigious Broad Institute in Massachusetts every person who comes forward to participate is like a quantum leap in the amount of data we have working at the frontier of genetic science their achievements have been recognized at the highest level so now we know the molecular mechanism of our disease in the wake of her own mum's death hailey was desperate for information and when she read about Sonya and Eric online she got straight in touch it was the start of a long-distance friendship between strangers with the rarest of bonds they have such a personal reason to get there he wants to save his wife's life she wants to live so they can turn old and gray together and I just think and they're smart cookies as well right I'm hurt trying to do that and now she and lucky have been inspired to play their own role in the search for answers which brings this Queensland brother and sister to San Francisco to take part in a pioneering study at the University of California so you guys have come an awful long way what's going to happen in the next couple of days well basically I think we're just guinea pigs for the next 48 hours where do cognitive testing motor skills testing we have an overnight sleep study so yeah hopefully they'll be able to use their findings for a cure I mean that's the hope it begins all right so Haley we're about to start the cognitive testing Haley and lucky are undergoing a battery of tests is this mean greendot stare out of the green dot a little puff of air is gonna come out that's my measure her eye pressure with so few people in the world carrying the FFR gene the reality is they themselves may hold the key to their own survival [Laughter] so it is currently just after midnight we are at a hospital in San Francisco undertaking a sleep study and as you can see I am looking more robot than human at the moment I am covered in electrodes literally from my head to my toes so hopefully they get some good results out of these and we do a few more tests tomorrow and then fly out back to Australia so sweet hopefully everything goes well most doctors in the world will complete their training complete their career as doctors and who have not seen a single case of this dr. Julio Rojas is a behavioral neurologist working at the frontline the race to cure this fatal disease putting this into perspective this is a very rare disease we're talking about more rare than one in ten million so having two individuals that are carriers here for us and is very valuable what hope is there for a cure I want to stay optimistic I I hope that in our lifetime we'll see something to prevent the disease for Haley and lucky there's one more important thing to do meet up with Sonya and Eric for the first time they're face to face with someone outside their own family who carries the FFR gene how was it the finally made everything Sonya we've spent so long talking to them online so to meet them in person after all these years was just incredible and to see the headway that they're making in terms of research is just yeah gives us hope because you've done the clinical trial twice haven't you yeah exactly and in fact even before that even though it is like not a nice thing to share with Hayley and Locke it's like it is a pleasure to meet people who get it exactly we would love to be at the point where we're doing a clinical trial and for that we will need people to stand up and say like I want to be tested so I feel like we can't move forward without people like Hayley and Locke right we need we need them on our team it could happen tomorrow but and tour really in that danger zone we have probably good ten years up our sleeve and I'm just like praying that there's a cure between now and then and essentially we could be hit by a bus tomorrow like why spend all this time worried about it wigging out about FFI when we should have been working out about buses like Haley and lucky know this most confronting of diseases could strike at any time but they're determined not to let it rule their lives you're on a question how to rid your family of this curse yeah I don't want to just sit here while the sands through the hourglass pass waiting for it to trigger and for me to [ __ ] it I want information I want answers and I want to bloody cure what do you think about bloody love yeah you can't put into it hello I'm Tara brown thanks for watching to keep up with the latest from 60 minutes Australia make sure you subscribe to our channel you can also download the 9 now app for full episodes and other exclusive 60 minutes content

Channel: 60 Minutes Australia

Views: 3,861,809

Keywords: 60 Minutes, 60 Minutes Australia, Liz Hayes, Charles Wooley, Tara Brown, Liam Bartlett, Allison Langdon, Tom Steinfort, Peter Overton, Karl Stefanovic, Peter Stefanovic, Jennifer Byrne, Mike Munro, Michael Usher, Ian Leslie, Gerald Stone, Sarah Abo, sleeping curse, family curse, fatal insomnia, fatal familial insomnia, can't sleep, insomnia death, hayley webb, lachlan webb

Id: 4Zaz67IcLDY

Length: 14min 24sec (864 seconds)

Published: Wed Oct 02 2019